Alzheimer’s? Your Paperwork May Not Be in Order

I had hoped that by now most adults in this country would have completed an advance directive for medical care and assigned someone they trusted to represent their wishes if and when they are unable to speak for themselves. Alas, at last count, barely more than one-third have done so, with the rest of Americans leaving it up to the medical profession and ill-prepared family members to decide when and how to provide life-prolonging treatments.

But even the many who, like me, have done due diligence — completed the appropriate forms, selected a health care agent and expressed their wishes to whoever may have to make medical decisions for them — may not realize that the documents typically do not cover a likely scenario for one of the leading causes of death in this country: dementia. Missing in standard documents, for example, are specific instructions about providing food and drink by hand as opposed to through a tube.

Advanced dementia, including Alzheimer’s disease, is the sixth leading cause of death overall in the United States. It is the fifth leading cause for people over 65, and the third for those over 85. Yet once the disease approaches its terminal stages, patients are unable to communicate their desires for or against life-prolonging therapies, some of which can actually make their last days more painful and hasten their demise.

End of Life Choices New York is trying to change that and has created an advance directive that it hopes will become a prototype for the rest of the country. (Washington State has already developed its own, though somewhat different, document.)

Judith Schwarz, clinical director of the New York organization, said that New Yorkers seeking the organization’s advice were the genesis of the new document. “They said things like, ‘Oh my God, what can I do? I’ve just been told I have Alzheimer’s disease. I saw my grandfather die from it and I don’t want to die that way,’” she told me.

“People should at least understand what the normal process of advanced dementia is about,” Dr. Schwarz said. “Feeding tubes are not the issue — they’re not done when dementia is terminal. Instead, a caregiver will stand patiently at the bedside and spoon food into your mouth as long as you open it. Opening your mouth when a spoon approaches is a primitive reflex that persists long after you’ve lost the ability to swallow and know what to do with what’s put in your mouth.”

While trying to provide nourishment for a terminally ill person nearing death is commonly done in the name of comfort and caring, if that person cannot benefit from food or drink, it can become quite the opposite. When patients can no longer swallow what they are fed, they may choke and aspirate food or drink into the lungs, resulting in pneumonia that adds to their misery and hastens their death.

“While you retain decision-making capacity,” she explained, “you have every right to decide that you would want to stop all life-prolonging measures, including food and fluid, when they are no longer wanted and can do no good.”

Unlike those with terminal cancer or amyotrophic lateral sclerosis (A.L.S.), diseases in which cognitive function usually remains intact, people in an advanced stage of a dementing illness cannot determine and effectively communicate what they do and do not want done for them. These choices, Dr. Schwarz says, must be made well in advance, especially if they wish to avoid prolonged dying that causes undue suffering for themselves and their loved ones.

Dr. Anne Kenny, a geriatrician and palliative care specialist at the LiveWell Alliance in Plantsville, Conn., said, “With dementia, by the time you get to the point of having to decide what you want done, you’ve largely lost the capacity to do so. Many people don’t realize that making these choices in advance does not cause people to lose hope. It creates more hope because patients know their wishes would be heard and respected instead of deferring to the default position of the medical system, which is longevity at all costs.

“Interviews with families have shown that 90 percent want comfort care at the end of life,” she said. “Only 10 percent would opt for longevity.”

Dr. Kenny said three characteristics define the late stages of dementia, indicating that the patient is nearing the end of life: losing the ability to use the toilet, walk and swallow independently.

“Most deaths from dementia are very peaceful, even beautiful. People slowly shut down,” she explained. “Families are relieved because dementia is so difficult at the end. The second best gift you can give your family is showing them the path you want to follow so they don’t have to choose it for you.”

The new directive not only asks that you record your wishes on the form about oral feeding and hydration near the end of life but also suggests that you create a video — perhaps on a cellphone — that can show institutional caregivers and others that the choice is what you wanted and is consistent with your values.

The patient, when completing the directive and appointing a health care agent, must be cognitively sound. The document is witnessed by independent people and notarized.

The document and its background are available online at End of Life Choices New York; scroll down to the “featured documents” section. It offers two options for patients when they are no longer able to feed themselves or make informed decisions about their care.

Option A asks that all medications and treatments to prolong life be withheld or withdrawn and that the patient not be fed artificially or by hand “even if I appear to cooperate in being fed by opening my mouth.” Option B asks that assisted oral feedings be done only when the patient appears receptive and cooperative and shows signs of enjoying eating and drinking. Only foods that are enjoyed should be given in any amount wanted and that the patient should not “be coerced, cajoled or in any way forced to eat or drink.”

Dr. Timothy E. Quill, professor of medicine in the Palliative Care Division of the University of Rochester School of Medicine, said that “if the directive leads to families and caregivers erring on the side of comfort and dignity for the patient, it’s a real step forward. It encourages them to follow the guidance of the patient’s ‘now’ self, not the past self.” Providing nourishment in end-stage dementia “should be all about the pleasure of eating, not force-feeding,” he said. “If patients show a strong interest in eating and drinking, it should be given to them.”

A version of this article appears in print on , on Page D5 of the New York edition with the headline: Planning for Patients With Dementia. Order Reprints | Today’s Paper | Subscribe